Good news and bad with my metastatic breast cancer

Hello again.  Maybe I should add "avoid consultations with the oncologist on Friday 13th" to remind me about today but I'm not particularly superstitious which is just as well as I was born on the 13th.  I had a CT scan in early December and the only thing that troubled the consultant was that one lymph node was suspicious in that it seemed slightly larger.  But it may simply be how the CT scan was done, the angle of the scan.  So as a precaution, I had another scan as soon as possible which was last Friday.  Back today, yes that lymph node is actually fine, but the scan now shows small tumours in the liver.  So now we know the paclitaxel chemo I have been receiving has kept most of the cancer at bay but it hasn't been able to keep the lymph nodes in the liver area from getting bigger or prevented it from spreading in this area.  I was advised to go on to GEM/Carbo now, in preference to choosing eribulin.  This latter drug will be shortly withdrawn by NHS so it is the last opportunity to go for it without private funding.  Obviously I want to give myself the best chance I can, so after discussing pro's and con's I've gone for the GEM/Carbo option.  I just hope I've made the best decision, but won't really know till the next scan in 9 weeks time.  It's all very scary but I'm keeping positive thoughts and everything crossed.  Also I just cannot believe how aggressive this cancer is.

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    Hi Boatgirl .... sorry to hear about the good news and bad - nothing is ever straight forward is it?  As the liver is the the only spread, i wonder if you have considered surgery or ablations/nanoknife to the liver tumours - this has certainly lengthened my prognosis and may be worth finding out about x

  • Max, thanks for replying especially in your situation. I think all options need to be looked at. I asked the oncologist about surgery and was told no. I actually have been looking at nano knife and I have to say the only reason I know about it is because I remembered some of your posts mentioning it. It's good to hear that it has worked for you. I have signed up for the GemCarbo as its a straightforward swap this coming weds at the chemo suite with the drug I've been on. But I'm also going to get ready for the next oncologist appointment including the possibility of referral elsewhere even though the travel will be a challenge.

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    Hi Gill - just wishing you all the very best for the procedure today, I hope it all goes well and you recover quickly. I am off to London in the morning for chemo on Friday but will hopefully be able to log on at some point so will keep an eye on your thread to see if you have posted. Thinking of you x

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    I have emailed the moderators and asked them to send you my email address - maybe if you do the same they will be able to help.  Lets hope so x

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     Hi Davek 

    I've had s tussle with fab and have added location Bedford so you hopefully can find me from my first name as below surname is 3 letters. Fingers crossed!

    Gill

     

     

     

     

  • Ok I've done that too also tried to set up via Davek so some way or another hopefully we'll get there!

  • Hope you are feeling ok gill. Just to say that if you do manage to email me, I can't access my account til later on Saturday as I am in london having chemo and don't know my passwords etc - silly me!  I do hope things went well x

  • Hi Max I had a minor delay in having surgery because there was a problem with my blood test results so I actually went down to theatre on Wed lunchtime. It was decided that microwave ablation would be better this time round. The tumours were well defined so good margins were easy to make and the three largest tumours have been zapped. I was brought round quickly afterwards and could only feel a bit of discomfort, no real pain. I was in overnight last night and they kept up observations throughout, every couple of hours. I was offered paracetamol but frankly didn't feel I was in pain so didn't have it. No stitches - there are a couple of surface scratches so small I had trouble finding them - my cats have dug deeper! I'm feeling fine, later today I'm seeing by usual oncologist and  I'm girding my loins to seek explanations, and to get ready to bail out.

    I hope your chemo goes well. Still not able to make direct contact yet but hopefully that will be in place soon.  Big hugs. Gill

     

  • Hi Dave - no reply yet from the moderators.  I've added my voice to the private messaging thread started by Max.  I also think I've found you on fab so I haven't done a friend request but have sent a message possibly to some unsuspecting other Dave.  But I did think the dog photo was the clincher as it is on this site and also on fab!!!

    Gill

  • Hi gill. I sent a msg to the moderators asking them to send u my email address. I got an email from the team sending me a link to something and when I went on it it just said I was declined access to the page. Maybe if they see this they can look into it. Hopefully Dave will help - sounds like u have found him x

  • Hi Max, hopefully Dave will recognise my cat Smudge on fab.  Today has been another rollercoaster.  Regular appointments, one for bloods and Xgeva, and the other with the usual oncologist.  The GEM/Carbo has stuffed my bone marrow / haemoglobin levels so I will be looking forward to a day of blood transfusion next week.  In addition to the chemo of course.  It is clear I am not going to be able to tolerate GEM/Carbo for long.

     I have also now made a formal request for a referral to the London oncologist as recommended by the clinical radiographer.  I have also sought explanations for the scan reports which failed to report the tumours sooner.  Hey ho, might as well go for broke. :-)

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    Gosh you are really going through it right now gill. Please check with your radiologist and oncologist that it's ok to have your chemotherapy so soon after the liver procedures. Mine was postponed a few weeks, then a reduced dose to allow healing before putting more strain on the liver from the drugs. Also stopped my chemo a few wks prior to nanoknife so check that too honey.  You are right that it's another rollercoaster ride but stay calm and all will be fine. X

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    Gosh you are really going through it right now gill. Please check with your radiologist and oncologist that it's ok to have your chemotherapy so soon after the liver procedures. Mine was postponed a few weeks, then a reduced dose to allow healing before putting more strain on the liver from the drugs. Also stopped my chemo a few wks prior to nanoknife so check that too honey.  You are right that it's another rollercoaster ride but stay calm and all will be fine. X

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